Wow, some of you are on huge doses. When I posted this, I was wondering if the high dose had been causing my new extreme joint pain and bladder pain. I asked my GI if I could take a lower dose the next treatment, he told me no, to give the full dose a try, but that I may be developing antibodies against it. And I was like "well if I might have antibodies against it, then should I risk taking a high dose, I am scared" and he said nah, you might have a slight reaction and then we'll know you can't take it anymore, no biggie. YEAH RIGHT. That night after the infusion, I had the WORST leg cramps of my life till mid day the next day, and then sporadically through the next 2 weeks. Then, about 7 days after the infusion, I had the worst extreme joint and body pain to the point where I couldn't use my hands or move at all for 2 days... GI says it was not caused by the Remicade, that no one has reactions after 48 hours. I am really getting frustrated with my GI at this point and would like to strangle him. I just finished tapering Prednisone and have slight joint pain at the moment. UCinNC, my GI does not want me to take 6mp or Imuran, he said they won't work or take too long and my ulcer is too deep to wait.... Next is Humira. I am never going near that Remicade again. It's too bad, because it was working pretty well for a while. To those of you on Remicade, please keep a look out for weird side effects like pelvic/bladder pain, or new joint pain. I wouldn't wish what I've been through on my worst enemy.
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcourt, Colazol, Proctocort, Anamantle, etc...
Diagnosed with Ulcerative Proctitis with almost rectovaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed with Psoriatic Arthritis & Fibromyalgia Current meds:
Remicade 700mgs every 6 wks (had reaction, will start Humira in 6 weeks) Lomotil, Darvocet, Clorazepate, Proctofoam HC, Tapering Prednisone again :( for joint pain, Glucosamine 500 mgs, Vitamin B